Advocacy and Integrated Care at the End of Life

A few years ago I was called by the family to advocate for a man in the Emergency Department who had suffered life-threatening injuries. I agreed, although I didn’t know the patient or the family. One by one they arrived, everyone grief stricken. With knowledge and a practice of very basic Therapeutic Touch skills, I began doing this. When I asked what would offer comfort, the wife requested a specific person to do an ethnic ritual. I contacted this person, and also asked for two hospital chaplains to be present. A massage therapist (cousin) began touching and massaging her family. Within the next few hours the room had quieted and a supportive energy was palpable. The ED staff had stepped aside as much as possible and let the rituals and grieving happen. The patient was later admitted to ICU, and passed away the next day.

This story emphasizes several issues that are important to address:

  1. How do you want to be treated at the End of Life? I’m not talking about “No Resuscitation”, but who do you want present, what do you want happening around you, what comfort measures would be important, etc. Five Wishes does an excellent job of presenting the questions, and it’s a legal document in 42+ states (www.agingwithdignity.org).
  2. Gather the family and have the conversation. Innumerable times patient-clients have told me…”Oh, my wife will know what I want (substitute son, niece, partner, etc.)”. No they won’t! In emergency situations, and/or when a long lost relative decides to show up, an individual’s end of life wishes can be far from what actually happens. Have the conversation around the family table and document the wishes of everyone over 18 years old.
  3. The majority of my clients say they want to die at home, with their family present. Unfortunately that’s not always the case, and emphasizes the need for a legal document that clearly designates your wishes, health care agent, durable medical power of attorney, etc.
  4. With increasing emphasis on the “Patient Experience”, healthcare facilities are more accommodating of patient/family wishes. This is an opportune time to request comfort measures…..aromatherapy, Healing Touch, massage, prayer rituals, acupuncture, etc. Conventional medicine has much to learn about complementary modalities, and there’s an increasing desire to do so.
  5. As you or your family engage in supportive, healing therapies, tell your primary care physician about it. Ask your insurance company to reimburse for services. We’ve talked about holistic care (body, mind, spirit) for years, and now’s the time for an integrated model to be recognized.
  6. Medical errors remain the #3 cause of death in the U.S. Always have a friend, family member or paid advocate at your side if you’re admitted into a medical facility. Someone needs to be a second pair of eyes and ears and an empowered voice for you.